At last, I am off pramipexole, I was on 5 x 0.088 mg tabs a day. It took a long time but I have been pramipexole-free for two weeks. I am still on oxycodone 20mg twice a day. Do I stay on the Oxycodone or do I stop taking it, I was put on Oxycodone in January 2023 to help me come off pramipexole which I have now done. Before being put on Oxycodone I have been on lots of other tablets but none worked that's why I was put on opioids. My wife and I watched the TV series "DOPESICK", which frightened us both. If I come off oxycodone what do I replace it with? My wife thinks I won't need anything but she hasn't got RLS. OR do I stay on oxycodone 20mg twice a day? Everyone thinking of taking Oxycodone should watch the TV series called "Dopesick". Please see the series.
What do I do now?: At last, I am off... - Restless Legs Syn...
What do I do now?
Congratulations on coming off pramipexole. I know it wasn't easy. You can stay on the oxycodone. After a couple of months you might want to try reducing it a little as the usual effective dose is 10 to 30 mg. You might also find that taking it only twice a day even though it is the extended version might result in mini withdrawals as it doesn't really last for 12 hours although they say it does.
Thanks for the help and advice as always.
And don't let the TV series worry you as at the low dose used for RLS you won't get addicted.
I don't know the Dopesick show, but it sounds like it is part of an hysterical anti opioid movement that seems to be current in the USA at present.
This is not based on scientific reality.
As long as one is not of an addictive personality, then low dose opioids are being proved to not be harmful.
I have been on Oxycontin 10mg twice a day, plus 5mg of Oxynorm (to make up the shortfall)
That is 25 mg of opioid per day-- and it covers virtually all RLS symptoms.
Except when I get triggered-- usually msg, and definitely alcohol.
Msg is a real nasty, as it gets hidden in foods and disguised as enhancers etc.
As Sue says- it would be worth trying to get down a little bit to a lower dose-- you could use the 5mg dose , or utilise the Oxynorm 5mg.
A lot will depend on your body's cycling of the med and how long you can make it last.
Oddly, I only get about 9 hours out of the Oxycontin, but can push the Oxynorm to 7hours. (It is meant to only last 6 hours?)
So-- it's a question of experimenting.
Keep an eye on triggers, and also you will be suffering the aftereffects of withdrawals for quite a while.
Good luck.
is 25 mg of opiate - I take 60mg of codiene at most 4 times a day ( co codamol). Is 25mg of opiate stronger than this? I have pain and codiene/parecetemol is not working and they have given me gabapentin instead of opiates
Dopesick relates to Oxy use for pain. Using opioids for pain leads to tolerance and patients have to increase the dose to achieve previous cover and that can lead to addiction.However, when opioids are prescribed for RLS it does not usually cause addiction/tolerance unless there's a history of abuse. Dr Winkelman's Massachussetts Opioid study confirms this.
The one point that DID come out of Dopesick is that Oxycontin does NOT last 12 hours for many patients. That's what fuelled the need to increase the dose.
Many patients with RLS do very well on Oxycontin taken every 12 hours. But many find it runs out after 4 hours and RLS breaks through.
In your case, after Pramipexole withdrawal,.it can take several weeks/months for dopamine withdrawals to settle.
RLS doesn't usually disappear. Unless you respond to iron therapy you will probably need meds for life.
Oxycontin works well for many. If you get breakthrough RLS, you can ask for 5mg pills and take every 4 to 6 hours.
And bear in mind that if you switch from Oxycontin you will get opioid withdrawals, the main symptom of which is RLS.
Here's the Massachussetts study.
Targinact, which is Oxycontin with Naloxone, is licensed in UK for RLS.
i have looked at the research. I don't have RLS but instead pain in jaw etc. I am worried about addiction of opiates and I can't get them from my doctor in the uk. Has anyone used co codamol 30mg codeine and 500mg paracetemol and also used say 10mg or 20 mg of oxycodub and what is the comparision?
I would not recommend opioids for pain relief. Only for RLS. Opioids work differently when used for Pain. Tolerance develops quickly and before you know it, you've increased the dose and addiction is more likely.Opioids work in a different way for RLS. That's why tolerance & therefore addiction are unlikely to happen ( unless there's a history of abuse).
We can get opioids for RLS in the UK but we often need a neurologist to prescribe them.
For pain, you'd be better making enquiries about medical cannabis from the clinics here in the UK.
can you get medical canabis in the uk? I have not heard of this.
Lots of private cannabis clinics in the UK.Cannabis was legalised in 2019 for medical use in the UK. But most doctors cannot prescribe it on the NHS.
You have to pay privately.
Curaleaf and Releaf are the two I have used.
For pain, you should qualify.
Cannabis is the ONLY thing that stopped my trigeminal and Occipital neuralgia during MS attacks.
I did not know this thanks and it helps trigeminal neuralgia etc which is I think what i have - I see curaleaf is a company - is the cannabis in what form and what dosage etc?
i have checked curaleaf - it is a subscription and paid for meetings - how much is the actual produce as i can't see that and in what format is it in eg a tablet?
Medical cannabis in UK comes as flower bud OR oil.Flower bud has to be ground in.a cannabis grinder and inhaled through a vaporiser to cool the smoke.
Flower works out around £5 to £6 a day for moderate use.
Oil with THC is cheaper and works out around £4 a day.
Initial private consultation is £45/50 with 3 monthly consultation.
I'm sure a pain relief forum will have more detailed info.
RLS patients tend not to use medical cannabis on an ongoing basis.
And I only use it ad hoc.
Call them up and they will send you more info
thanks so much - i have register with "Releaf" UK and will see - I have never taken canabis or its by products but anything to help control pain as opiates are not working. I guess by doctor will be dead against it
Your doctor can't stop you using medical cannabis.The reports of pain relief from cannabis for nerve pain are overwhelming.
One day, GPs will realise that cannabis is highly effective.
I meant he will be dead against it - it is private and so I will have to pay but if they ask him or contact him I think he will not recommend it - he is old school and I like him but he is old school
I understand but it makes no difference whether he agrees or not. He cannot stop you accessing legal, medical cannabis. If you qualify, which you do, the private doctor issues a prescription to the cannabis pharmacy and you pay. The cannabis is shipped direct to you.And if it works- you can tell your old school GP. He may decide to update his knowledge and do some research.
I see you are in the uk as well. I have never taken cannabis in any format. Can you get this on the nhs or in a private prescription? I have heard that it can help pain management from studies in the USA but is it suitable for nerve pain. I can see my doctor's face right now saying "computer says no and be sensible!" lol
I'm in agreement with all the previous advice. Your task now is to find out the least amount of Oxycodone which will continue to mask RLS symptoms. So continue your current regime for another month or so to make sure the pramipexole is completely out of your system. Then decrease the Oxycodone by 5 mg every 2 weeks until you find that your RLS symptoms are no longer being masked - then bump the dosage back up to where it was previously effective. Good luck.
Hi, I’ve just been put on ocycodone.l like you was on 5 0.88mg of pramipexole I took my last one on the 31st of August and it been hellish. I started on 5 mg at night and it did nothing I’m now in 10 mg which is doing something. When I took my prescription to boots yhe pharmacist said have you seen Dopesick your going to get addicted to these! I said it’s highly unlikely (I’d read stuff I’d seen Sue and Jools recommend) but I said I’d rather have to take this tablet for life than have no life. I’m waiting to hear about an iron infusion.
Good luck 😉
Great answer.I love the way people with no RLS have all the answers.
Don't be afraid to push back firmly.
Thanks, people just don't seem to get it unless they have experience of it. It's an awful 😖 thing to suffer with. Thank goodness for this forum! You have all helped me so much!
Restless Leg Syndrome. What is next for me after withdrawing from Pramipexole.
I don't actually know what to do now.
Pennygates
Please don't do what I did
